Ca125 gone up again

Hi everyone hope your all ok.. so i went to see oncologist today bloods last time in jan.. were 400.. now gone up to 700.. so she said got to another ct scan last one was january as she said after chemo ended nov bascially 6 doses of gem/carbo kept them 2 lymph nodes stable.. and now they have decided to make movement as bloods 700.. so have to wait for ct scan and yet again no appointment with her for 8 weeks.. so in meantime she said if i have any symptoms to get in touch with hospital my nxt course treatment will be caeylx.. why do they leave it another 8 wks is my question do they not realise the stress were under dayin/day out.. so today has bein a crappy day was hopeing for better news as if and i no i will have more chemo it will be 3rd time around sending u all hugs xxx

9 Replies

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  • So sorry you've got this horrible wait. Know that everyone here feels for you and sends you love and strength xxx

  • It is stressful isn't it and I can really relate , my recurrence was confirmed 26th Jan and I'm still not on treatment - possible clinical trail malarkey to work through first.

    You can't help but worry can you?

    However I think you should have an earlier appointment and not be slotted in when she next has a slot. Your CNS should be arranging this.

    When my CA went up,and I had an extra CT scan it was arranged within 7 days and I was fitted in to the next Onc clinic 2 weeks later.

    Take a deep breath and get on that phone tomorrow ( my humble advice)

    Sending you hugs

    Clare xx

  • Thank you for reply your right i think when ive had my scan will see can get earlier appointment as 8 weeks is a long time to wait especially if i get my scan through in next 2 weeks xx hope you get sorted soon...sending u hugs xx

  • I totally sympathise. My CA125 has been going up every time since Jan. I agree you should push for earlier appointment.

    All the best to you

    Netti. X

  • Sorry you have a wait for to see the oncologist and get the scan. It is a worry but I think nowadays they are slow to restart treatment because the longer you have between treatments its better for your body as it can recover. Incidentally there is no great advantage to having treatment earlier than later or so my gynae onc says. I would be a good example of that, my recurrence was obvious but was waiting for ct scan for quite some time as my gynae said it wasnt warranted, However I had pain in my bum area so sent to Rheumatologist who ordered mri . So this showed recurrence. I was in fact complaining for six months before I was treated. Needless to say I dont see that gynae now. Bigger picture is that it was 2010 and despite more recurrence I am still here

  • Hi tracex- I totally sympathise with you. I find the stress of waiting the worst, you end up going a bit bonkers when your brain starts on an overload of information/misinformation.

    I found out on Monday that my ca125 had gone from 20 to 80 after finishing my chemo for the first reaccurence in Jan after a 3 year remission 😑. The only good thing is I have a ct scan next thursday then results on the following Monday. Even though we may end up on a watch and wait as we need ideally a rest from the old chemo- I think just knowing what's happening and getting a plan together is better for our mental health.

    It may help you if you push for an earlier clinic appointment just to keep your head together.

    sending a hug 🤗

    Carolyn xx

  • Hi i am in the same boat. My ca125 is going up to 235. My next option is caelyx. So see if ca125 rises again then will try caelyx. I am on tamoxifen but it must have stopped working. I dont mind the waiting i am quite philososphical about my progress.

    I wish all is well for you & know we are all with you.

  • Thank you lovely ladies for your kind messages and thoughts.. just pleased how all of us on hear are always there for each other through our stressfull days...probably more than our consultants are sending u all big hugs love loads xxx

  • Hi Tracex,

    Sorry to hear that you have to wait 8 weeks the stress is not good for your over all health.

    I just get back he results from my scan and the tumor has returned, I was told taxol is my next treatment and the clinic would let me know when to come in, I waited 3 days and was stressing out so I rang and told them I needed to start as I was feeling quite sick, I did play it up a bit, I'm now starting this Monday.

    Now I'm stressing out because I'm starting chemo,

    If you are offered Caelyx I had it for 6 month and it did help ,the side effect can be hard but manageable and the best part it's 1 dose every 4 weeks,

    I hope you have some results soon

    Cheers Lorraine xx

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